Fort Lauderdale, Fla--Every cancer patient must deal with the psychological issues inherent to all stages of the disease, making the recognition, diagnosis, and treatment of distress critical to total care of the person with cancer, Jimmie Holland, MD, of Memorial Sloan-Kettering Cancer Center, said at the third annual conference of the National Comprehensive Cancer Network (NCCN).
Dr. Holland headed the NCCN’s multidisciplinary panel that created the first draft of its guideline on distress management in cancer. The NCCN is a coalition of 16 leading US cancer centers.
One of the challenges in implementing standards of care for psychosocial illness associated with cancer is removing the stigma associated with such a diagnosis, Dr. Holland said. Thus, the NCCN panel chose to use the term "distress" to avoid negatively connoted terms such as "psychiatric" or "emotional." Distress "sounds" normal, is not embarrassing to patients, and makes it easier for the oncology team to talk to patients about their mental well-being, she said.
Standards of Care
The NCCN recommendations begin with a list of standards of care that outline the obligations of institutions to cancer patients with distress (see table).
Although probably less than 10% of cancer patients will actually come forward and say they are distressed about their disease, somewhere between 20% and 40% of cancer patients are shown to be experiencing significant distress when evaluated by outpatient surveys.
Screening cancer patients at their initial visits and at appropriate intervals in their treatment is critical to identify the level and nature of their distress. A "distress thermometer" used as a screening tool at Memorial Sloan-Kettering Cancer Center, gauges distress in degrees from 0 to 10. A score above 5, Dr. Holland said, "indicates fairly significant distress."
The guideline calls for a clinical assessment of patients by the primary oncology team--oncologist, nurse, and social worker--to rapidly screen for distress and triage patients to appropriate resources within the institution and community. Those with mild distress can generally be managed by the primary team and resources such as support groups.
If the level of distress is moderate or severe, the team may refer the patient to an appropriate support structure within the institution--psychologyl/psychiatry, social work, or pastoral care--depending on the nature of the distress. "Referral to one discipline does not prohibit the subsequent referral to another," she said.
Oncologist Michael Levy, MD, of Fox Chase Cancer Center, noted that routine screening for distress and triage to appropriate treatment, as recommended by the guideline, would result in increased reporting, diagnosis, and treatment, with resulting improvement in patient compliance with treatment programs and in their quality of life.
While acknowledging that every institution will have its own ideas about implementing the standards of care, Genevieve Foley, RN, of St. Jude Children’s Research Hospital, said the oncology nurse would likely be the person most responsible for assessment and triage. The nurse, in concert with the oncologist, would evaluate data and identify the necessary resources.
Matthew Loscalzo, MSW, of Johns Hopkins, said that a universal screening program at Hopkins is the first of its kind at a cancer center. "We have been able to do this because of our use of trained and motivated volunteers who distribute and collect the forms and encourage compliance," he said. All patients at the outpatient center complete the Brief Symptom Inventory, a screening test for psychosocial distress. Persons identified as high risk for distress receive immediate attention; moderate-risk individuals receive a phone call; and low-risk persons receive a packet about chaplaincy, psychiatry, social work, support groups, and other resources.
Distress, like pain, must be recognized, monitored, and documented at all stages of cancer treatment, Dr. Holland said. "Patients in distress must no longer go unrecognized and untreated."